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Another Voice: SSI can benefit disabled children and their parents

By August 24, 20233 min read

By Jeffrey Freedman
As seen in The Buffalo News on August 15, 2023

When Supplemental Security Income (SSI) was established in 1972, it was to provide a national standard of government support for disabled members of poor, working families. The program mainly served adults until 1990, when the Supreme Court established separate guidelines for children. Thenadvocacy organizations began alerting parents of children with disabilities about SSI and the number of children enrolled grew to 1 million – until recently.

Benefits for SSI are not high. Ranging from $500 to $750/month, they can, however, help provide enrichment activities, sensory tools and housing adaptations. Children who qualify for SSI are also entitled to Medicaid.

Severely disabled children likely will never earn enough to support themselves, and parents worry how their children will live after they are gone. SSI can be a piece of the plan for securing the futures of these adult children, who now live longer due to advances in medical technology.

Going back to “until recently,“ However, SSI enrollment has reached all-time lows, says Kathleen Romig, director of Social Security and Disability Policy at the Center on Budget and Policy Priorities. Over the past decade, the number of children enrolled dropped 20%, and applications are down 50%, according to the Social Security Administration’s (SSA) annual report.

In part, the decrease may be due to a lack of knowledge about SSI among parents of disabled children, and medical and education professionals, who could refer children to the program, But it is also due to staff and funding shortages at the SSA. Romig reports between 2010 and 2023, the agency’s customer service budget fell 17%, and staffing dropped 16%. In 2022, the SSA’s staff was at the lowest level in 25 years.

Shortages have made applying for and keeping SSI benefits a bureaucratic nightmareof lost documents and misrecorded information. Parents who email, call and fax the agency get little or no response. To apply for SSI for a child, families must work with a Social Security representative – and it is almost impossible to get an appointment. My firm sees many frustrated parents who need help securing benefits for their children.

Sens. Ron Wyden, D-Ore., and Sherrod Brown, D-Ohio, drafted a bill to modernize SSI at a cost of $500 billion over a decade. Wyden, describing SSI frustrations as “bureaucratic water torture,” says it’s time to bring the program into the 21st century. For parents of disabled children, this cannot happen soon enough.